Long-term Follow-up (LTFU) Project

Blood and marrow transplant (BMT) has an established role in the treatment of a range of haematological, immunological and metabolic conditions and for many patients provides the only possibility of long-term survival. At the same time, BMT may cause significant morbidity and mortality and is associated with a series of serious long-term effects – many of which may impact upon the transplant survivor’s life expectancy and quality of life. For survivors of BMT therefore, it is crucial that they have access to high quality, expert, integrated healthcare in the years following transplantation.

What is long-term follow-up?

In the blood and marrow transplant related academic literature definitions for the following have been specified: late complications include all events occurring beyond 3 months. However, these can be separated into delayed (3 months to 2 years), late (2 to 10 years) and very late (>10 years).1

When ‘long-term follow-up’ is referred to in ACI Blood and Marrow Transplant Network literature it is encompassing the follow up of patients who have had a blood transplant and are now in the late (2 to 10 years) and very late (>10 years) time period post-transplant.

Why is long-term follow-up important?

During the past 30 years advances in BMT technology and techniques have resulted in an increase in both the number of people undergoing the procedure and the number becoming long-term survivors.

These survivors will be at increased risk of late complications resulting from their disease, its treatment and from BMT itself. These complications may impair not only physical functioning but may also have significant impacts upon a survivor’s psychosocial and emotional function – causing unemployment, relationship difficulties, financial hardship and social isolation.2 The collective impact of these complications is profound.

Next Steps

In November 2017, the LTFU Codesign project saw a prioritisation workshop take place. This workshop involved 20 consumers, carers and clinicians who worked together to prioritise the previously generated 140+ emotions, experiences and touchpoints.

Embed greater consumer and carer involvement into business as usual for the LTFU Working Group.

Update June 2018 - The LTFU Working Group's Terms of Reference and site representation has been amended in line with the Experience-Based Co-Design Project Progress Report's recommendations. The group also now has broader consumer and carer representation, which will support the design and implementation of improvement ideas.

Work towards the developing consumer and carer education resources on LTFU and building relationships with organisations that have existing consumer and carer resource platforms.

Update September 2018 - The LTFU Working Group Education and Communication Project Group is currently working on creating fact sheets to educate consumers and carers, and health professionals, on health promotion behaviours.

Update October 2018 - The LTFU Working Group Education and Communication Project Group has decided to create the following:

Health

Considerations with...

Bone

Being a Transplant Caregiver

Cholesterol

Finances and financial assistance

Dental and Oral

Insurance and insurance assistance

Emotional

Travelling

Fatigue

Browsing information online

Fertility and Reproductive

Long-term follow-up?

Heart

Transition

Hormone

How to talk to your family, friends and colleagues about long-term follow-up

Kidney

Managing your health and working with your general practitioner (GP)

Learning and Memory

Liver

Lung

Metabolic Syndrome

Nutritional

Pain Management

Second Cancers

Skin Health

Stomach and Intestinal Health

Develop the 2018/19 LTFU work plan to consider and include other improvement opportunities raised at the LTFU Codesign November 2017 Prioritisation Workshop.

Update July 2018 - The LTFU Working Group has started developing a Long-term Follow-up Model of Care for Allogeneic Bone Marrow Transplant Recipients.

Update September 2018 - The LTFU Working Group Transition and Coordination Project Group is currently working on adapting the Long-term Follow-up Clinical Guidelines into a Patient Screening Record to support and empower those who have undergone a blood and marrow transplant and their carers in their long-term follow-up care.

Get Involved

To get involved, please fill out the Join the Network form and note the LTFU Project in the 'Comments' section